The Health minister to the rescue?

In a radio interview on Nine to Noon, NZORD Chief Executive Collette Bromhead and Health Minister David Clark discussed the policy shifts regarding funding of treatments for rare diseases. Despite the lack of policy in the coalition agreement, the Health Minister confirmed that he is committed to progress in funding treatments for rare diseases and is seeking advice on how this can be achieved within existing structures. Specifically the Minister emphasised he is wanting to see equity at the core of decisions for this group as a new round of funding of $5 million per year for 4 years, kicks off this year. A glimmer of hope remains.

Performance report to June 2018

Rare Disease Epidemiology – 2nd Edition

In mid-2017, John was invited to write a preface for a book called Rare Diseases Epidemiology, which concentrates on the work done for LDNZ and ISMRD and talks about what patient advocates can achieve.

Here’s the link to the PDF or you can pay for and download the book here.